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Letting go of labels…

Since publishing my blog with the story about my daughter Haylie overcoming her brain injury, I have been approached by readers for all sorts of reasons – people looking for more information, people seeking hope and inspiration for their effective work with their own hurt kids, people congratulating us, people wondering how on earth that could really be possible, and people who seek to bond on the basis of “Ain’t it tough being the mom of a disabled kid and aren’t our disabled kids still wonderful in their own unique ways.”

That last group, I have to admit, gives me a bit of a stomach ache for one reason. I’m not actually in that group, and I almost feel guilty for saying so. But the truth is this – I never wanted to be in that group. My single intention from the very beginning, and every step along the way, the thing that got my tired ass up out of bed and drove me to beg, borrow, and steal every dollar we needed to do this paradigm-shifting treatment, was the idea that I knew, deep down in my heart of hearts, that I would one day be shopping for colleges, not group homes. That was my dream. My dream for my daughter, who is no longer disabled.

Now, don’t misunderstand me here because I have deep love and respect for these well-meaning mamas who are champions at creating community, community that they build around their kids’ struggles to keep them from feeling so alone in the stress and despair of watching someone who means the world to you not doing so well in the world. I can totally relate to that feeling of struggle. I know what that feels like. It’s terrible. As I’ve already written about briefly, I have certainly been there on the worry train, not knowing what in the world would happen to my kid who can’t do what the other kids can do. It’s just that instead of putting my energy and attention into building groups around that, or trying to change the world to better accommodate my daughter and understand her problems, I set out to fix them. To give my daughter the chance to live without the limitations caused by her brain injury. By fixing her brain.

These wonderful mamas also remind me of another group of people who came out of the woodwork since I went public with Haylie’s story – the ones who meet her after being told that she was brain injured as a baby, or who never knew about that part of her past. They inevitably approach me with some astonishment and say things like, “I couldn’t even tell! I mean, she seems so normal!”

I want to say, “Yes, well, so do you! I mean, you had the flu before and looking at you today I wouldn’t even know that! You recovered from it, like completely!”

Sarcastic, I know. But think about it. I had a sprained ankle once and I’m not going around identifying myself as that. You might have broken your arm before, and I’m quite sure you don’t introduce yourself that way. We don’t take those things on as part of our identity. Why not? And why on earth would it be different for neurological problems?

I’ll tell you why. Nobody (well, almost nobody) in mainstream society is actually fixing them. So, nobody (well, almost nobody) knows that they can be fixed.

When Haylie was little, we partook of the mainstream interventions for developmental delays for a few short years. But, once we found The Institutes for the Achievement of Human Potential and learned to remove the cause, not target the symptoms, we never looked back. The reason is simple. Those mainstream “treatments” don’t work.

Special education, early pediatric interventions, physical therapy, occupational therapy, glasses, orthotics, medications, more medications, surgeries, counseling, casting and botox, testing, testing, more testing, none of it works. Here’s why. They don’t treat the cause. The cause of my daughter’s problems was an injury to her brain. She had lots of neurons that were damaged and not able to do their jobs, and not one of those mainstream approaches did anything to heal hurt neurons or to encourage the ones remaining to pick up responsibility for those neurological tasks and get on with it. No. Every single one of those mainstream interventions did one single thing only. They attempted to help her to live with her brain injury and the dis-abilities that resulted as a side effect of it.

For most of us, we still see through the eyes of the current paradigm, the one that attaches labels to clusters of symptoms and then attempts to remove or mask those symptoms with surgery, medication, behavioral intervention. It never works. The root of the problem remains untouched. In fact, some of those treatments, like pharmaceutical medications, can actually injure the brain more, leading to a lifetime of living under a label with a big problem that remains unchanged, or gets even bigger.

It doesn’t have to be this way. I want so much for people to know this.

I am writing to give you a glimpse of what is possible. I want parents to understand that labels like autism, epilepsy, ADHD, learning problems, reading problems, dyslexia, developmental delay, cerebral palsy, motor problems, among many others, all mean one simple thing. The brain isn’t functioning as it should. These labels all point to symptoms that indicate that the brain is disorganized in some way. Neurological organization is possible, which means that the symptoms would go away. The labels would no longer apply.

That is what happened with my daughter. She once had profound “learning disabilities” and she is now making excellent grades at the community college, preparing for business school. She once had regular seizures, despite the numerous medications she took. She is now free of medications and seizures. She once had motor delays and was extremely uncoordinated. She became a triathlete and a gymnast. And, as much as I love her, her progress is not because she is special. It is because she had a program of neurological organization that allowed her to outgrow her brain injury.

If you know a parent who struggles raising a child with any of these labels, please share this information.

To you, parents who are frustrated with the lack of progress in mainstream treatments and feel there must be something more that can be done to help your precious child, I say, “Yes, you are right!”

To those parents that have felt the pain ripple through their bodies as they heard some doctor, some expert, tell them that their child will never walk, see, read, speak, learn, never develop normally, I say, “Don’t believe that nonsense! Trust your instincts. There is Hope.”

The Institutes for the Achievement of Human Potential have been teaching parents how to make their brain-injured kids well for 60 years now. Their program isn’t easy. It’s a lot of hard work. But it’s not as hard as living with a brain-injured kid that isn’t getting better. Take a peek at their results: www.iahp.org/results/

You know, I had a wonderful pediatrician caution me once, regarding this program we were doing that he was politely skeptical about. “Everything that is effective, everything that really works,” he told me, “finds its way into the mainstream.”

“Yes,” I thought, as I headed out the door with a knowing smile, “every radical new thing that actually works and is opposed by the establishment at first, does indeed make its way into the mainstream, eventually. In like a hundred years. That would be way too late for my kid. But, have a nice day. No time to stand around and chat. I’ve got work to do.”

That’s the part of me that some have called arrogant, stubborn, closed-minded. I’m ok with that. I was wholeheartedly, unabashedly, completely closed-minded to the possibility of not achieving the dream. As you can see, community building was not necessarily my forte. Staying true to my dream was.

This semester, Haylie is shopping for colleges. It’s wonderful to watch her exploring her options for the future. And worth every single minute of the program we had to do to get here. Outgrowing a brain injury doesn’t happen overnight. It can take years. But it is possible. I’m here to say that it absolutely can be done. May that bring Hope to the Mamas and Papas who need it most.

Never give up on your dream.

Ah, but now I’ve gotten ahead of myself again. I haven’t even told you how she got hurt yet, have I? Let’s go back to where we left off – me and my newborn girl, alone in a late night hospital room, after a long difficult birth…

Darci, this is a well written article. All brain injured people benefit from rehab of some sort to assist them in their recovery. But the severity and type of the brain damage determines which treatments work best for each individual. Granted correct diagnosis and treatment is needed to contain and minimize damage thus not everyone benefits from the same treatment plan. The main point is that you must find a treatment plan that will help make the injured person the best they can be. Life goes on whether with non-conventional or mainstream treatment.

Thank you for your comments, Mary. My main point, the thing that is so important to understand, is that the treatment plan must address the cause, the brain. So many of them are not doing that, which is why the results are as limited as they are. To me, “mainstream” simply means what is most popular or well-known at any moment. It isn’t necessarily what is effective. My hope is that we can begin to make what actually works more popular. What if “the best they can be” is so much more than we’ve been told?